Leaderboard

Hi there, Lindsay, I just might be the only other ROS-1 person on this forum. I was told ROS-1 people tend to be never-smoker, young(-ish) women - I've never been the one to follow any trend/fad, but here I am. 😣 I do believe Crizotinib is available in Canada - I'm surprised your medical onc has not mentioned it as there are at least one targeted therapy option for several mutation types. I was on crizotinib for 2 years. Let us know if you have any questions. If you need to vent, or just looking for support, this is the place - I've done lots of both 😁 and the same "you got this" from a fellow lung cancer fighter hits you very differently than any of your friends/family's (who has never gone through any cancer journey) "you got this". MB

Hello ChiMama and welcome here! I agree wholeheartedly with Tom. G's suggestion that you get a second opinion before you have a thoracotomy. I think that most of the people on this site who have needed a lobectomy for an early state lung cancer have had it by VATes rather than thoracotomy, although there are some exceptions. I had my lobectomy (entire lower right lobe and a bunch of lymph nodes) by VATs in November off 2016. The surgery was relatively easy as far as surgeries go, and given that any surgery requiring general anesthetic is serious. I was up and walking in the hospital hall the same day and discharged from the hospital the next day, with a chest tube in place. I do think my discharge was faster than most people's and also that most people aren't discharged until the chest tube can come out. I had a persistent air leak, so my tube was in about 10 days. I was able to manage it just fine at home with the help of my spouse to change the dressings. It's my understanding that thoracotomy is more painful and has a longer recovery time, so I wouldn't want to have one unless I was convinced that there was some really good reason to have one. And there may be a really good reason why you need thoracotomy, but I think that your surgeon just doesn't do them for cancer is unusual. Maybe others will chime in here with their opinions. Best wishes and let us know what questions you may have and how we can support you. That's what we're here for. Bridget O

Hello ChiMama, I had surgery in 2018 for a primary lung nodule in the right lower lobe. Previously I had surgery for left breast cancer in 2001, right breast cancer in 2012, thyroid cancer in 2015. My surgeon, a cardiopulmonary specialist, opted for removal of the entire right lower lobe. He explained that taking the whole lobe ensured he got every cancer cell within the lobe, and he also said that removing the whole lobe protects against losing or spreading any stray cancer cells. The surgery required 5 days in hospital, a chest tube, and daily x-rays to check that my lung did not collapse. The really interesting development was that the pathologist found another cancerous nodule within the lobe that had not been seen on CT scan or PET scan. It was first diagnosed as SCLC, where the first nodule was adenocarcinoma. The diagnosis was changed shortly after my case was sent to the Tumor Board of our large Cancer Center. The new diagnosis was a rare neuroendocrine carcinoid, not usually seen in lungs. Neither nodule required more treatment after removal. Now I am being watched for another ground glass nodule in my right middle lobe (they now refer to it as my lower lobe), and in fact I just had a CT scan today. If my oncologist is still suspicious of it after the report, she will want to do a biopsy. You should get as many surgical opinions as you need to feel comfortable. I only had the one consult but I felt confident with the surgeon and it turned out OK.

ChiMama, VATS versus conventional thoracic surgery is a tough call. Theoretically, scan diagnostics should be able to identify questionable lymph nodes ahead of surgery. But nothing replaces the doctor's actual visualization so your surgeon may be making a good point. Many however have VATS lung surgery and have suspicious lymph nodes removed in addition to lung tissue. This kind of question is really best answered by getting a second and perhaps a third thoracic surgeon opinion. Your pulmonologist ought to have a view about lymph nodes and resection so I'd ask his opinion on VATS--no VATS. I'm not sure there is a difference in approach or surgical method for removing a primary tumor and a metastatic tumor. Stay the course. Tom

Hi Jack, I just found out that I had MET amplification last week. I'm not certain about the exon 14 part either, but I'm going to discuss it with my oncologist. This drug is being considered for me. I'll know more when I meet w/him on Tuesday. https://www.emdgroup.com/en/news/tepotinib-25-03-2020.html